Adult Sibling Survey for Parents

The siblings of individuals with autism spectrum disorders (ASD) are becoming parents themselves. It is not yet known what the risk for ASD is among their children, how to predict it, and who might benefit from intervening early.

If you have a sibling with ASD (this could include a diagnosis of autism spectrum disorder, autism, Asperger Syndrome, or pervasive developmental disorder) and you are also a parent, then you can help us answer this important question by completing a brief survey for the Second Generation Survey Project.

Please note that» All of your information will remain confidential (only your IP address is logged to prevent duplication of data), » There is no cost to participate, and » You will have the option to provide your contact information so we can tell you about further opportunities for study participation (which include compensation).

Before starting the survey, please answer the following 2 screening questions to determine if you are eligible. If you are eligible for the study, you will next be asked to review the informed consent language and then give consent at the beginning of the survey.

Find out if you are eligible for this survey.

Do YOU have a full biological sibling with ASD?*

Full biological means that you and your sibling genetically share the same two parents.

Yes

No

Do you have a biological child at least 1 year of age?*

Biological means that you and your child share half of the same genes, half from you and half from the other parent.

Yes

No

Eligibility Determination

Thank you for your interest in this survey, but at this time you are not eligible to participate. If you are interested in learning about other studies through the Social Developmental Studies Laboratory, please contact Teddi Gray at 314-286-0068 or grayt@wustl.edu.

You are eligible to participate in this survey. If you wish to proceed, please review the informed consent below and click "I am interested in proceeding to the survey."

Principal Investigator: John Constantino, MD

Co-Investigator: Natasha Marrus, MD, PhD

Research Team Contact: Daniel Gray, MSW (314) 362-3734

Thank you for your interest in this study. This is a research study. We invite you to participate in a research study being conducted by investigators from Washington University in St. Louis because you have a biological sibling with Autism Spectrum Disorder (ASD) and are also a parent. The purpose of the study is to measure the transmission of autistic traits within multiple generations of families with an individual affected by ASD. To do this we are collecting family histories of an ASD diagnosis to ascertain the prevalence of recurrence within future generations. The National Institutes of Health, through its support of the Intellectual and Developmental Disabilities Research Center, is funding this research study. Approximately 500 parents who have siblings with ASD will take part in this study.

If you agree to participate, following your consent, you will complete a two-minute survey regarding your siblings and children and whether they have an ASD diagnosis. All information you provide about these family members will remain anonymized. You may exit the form at any time by closing the web browser page. No information will be recorded as long as the submit button is not clicked. Your involvement in this study will last approximately 5-10 minutes, including your time to read this consent.

This form will log your IP address, which the research team will only use to prevent duplication of records. At the end of the form you will be given the option to provide your contact information to be re-contacted about potential enrollment in an extended protocol for this study, or you may choose to submit the form without providing this information. Participants in the extended study protocol will be compensated for their time.

There are no risks from being in this study, and you will not benefit personally. However, we hope that others may benefit in the future from what we learn as a result of this study, through increased understanding of the transmission of ASD within multiple generations of families.

You will not have any costs for being in this research study. You will also not be paid for being in this research study.

Your participation in this study is completely voluntary. You may choose not to take part at all. If you decide to participate in the study you may stop participating at any time. Any data that was collected as part of this study will remain as part of the study records and cannot be removed. If you decide not to take part in the study or if you stop participating at any time, you won’t be penalized or lose any benefits for which you otherwise qualify.

We will keep the information you provide confidential by keeping all web-based information transmission encrypted on this secure Washington University website. Data files will be stored on a computer secured behind the Washington University firewall. However, federal regulatory agencies and Washington University, including the Washington University Institutional Review Board (a committee that reviews and approves research studies) and the Human Research Protection Office may inspect and copy records pertaining to this research. If we write a report about this study, we will do so in such a way that you cannot be identified.

We encourage you to ask questions. If you have any questions about the research study itself, please contact: Natasha Marrus at 314-286-0089. If you feel you have been harmed from being in the study, please contact: Natasha Marrus at 314-286-0089. If you have questions, concerns, or complaints about your rights as a research participant, please contact the Human Research Protection Office at 660 South Euclid Avenue, Campus Box 8089, St. Louis, MO 63110, 1-(800)-438-0445 or email hrpo@wusm.wustl.edu. General information about being a research participant can be found on the Human Research Protection Office web site, http://hrpo.wustl.edu. To offer input about your experiences as a research participant or to speak to someone other than the research staff, call the Human Research Protection Office at the number above.